"One can never consent to creep when one feels an impulse to soar." - Helen Keller

Friday, August 26, 2011

Bring Them Together

A week ago, I wrote about a father who beheaded his son with disabilities. The father said the constant and ongoing care made him look at his son as an object rather than a person. Today in the news is the story of a mother who dropped her baby from a parking garage. The baby had an orthopedic condition that was correctible, but the mother was overwhelmed by the way the child looked. And, my blog is full of other similar stories.

In each of the cases, the offending parent is usually prosecuted and convicted. But I really wonder – does it have to get to that point? What if the parents had support early on, support that would help them learn coping techniques, support from someone who has ‘been there, done that.’

Obviously something is not working in our society when it comes to caring for a child with disabilities.

Many, many parents, probably even most parents, when confronted with raising a child with disabilities, will buckle down, educate themselves, and become even better parents than initially thought possible. The provide love and encouragement, care and consistency. They provide a future for their child.

And then there are the parents who do not.

I wonder if bringing the two together could make a difference. Would having a parent in a similar situation, a parent who has developed coping techniques, who has learned to bury the dark thoughts, who has become an advocate for their child, a parent who could serve as a role model for the new and/or overwhelmed parent begin to save lives?

I was lucky. I found a group of supportive parents who could be there for me. Parents who could help me navigate the systems which so often lack the understanding and compassion we and our children need. But in the beginning I did feel an intense isolation. I believed no one understood what my life was like, and I believed that everyone was judging me. It took action on my part to find my circle of parents, and I wonder if the overwhelmed parents are even capable of taking that action.

I don’t know who could connect the two. I don’t know who could set up a mentorship program that provided support when it was instantly and desperately needed. But I think it is an idea that should be tried.

I’m tired of reading about children who die – children who could have long happy lives.

I think the partnering would probably help a lot of parents - althogh not everyone, mind you.

As far as the "how", the only thing I can think of is the onus falling on each disability association - so the Down Syndrome Society matches those parents, APSEA or CNIB (in Canada) matches up parents of deaf/blind children, etc.

The problem is there aren't groups for every condition and many children never receive a formal diagnosis. Personaly, I would like to see more support (groups) for parents of the mentally challenged. I was going to say we have nothing here but just realized that isn't true - we do have the ACLs (Association for Community Living) in each province.

I suppose the onus would have to be on the hospitals/drs to make the initial referral to the organizations and then (unfortunately) the work would fall to the organization to do the pairing.

Ashley Lynn

Why is this blog named Pipecleaner Dreams?

Who I am...

I am Ashley's Mom and the luckiest person in the world. I've often heard that if one is 'good' in this world, they will receive their rewards in the next. But, I have already received my reward - I have been given the privilege of raising this beautiful child. I'm a single parent of 5 children, 4 of whom have significant disabilities. They are all so very special and each has their own piece of my heart.